Why the Disability Struggle Impacts All Humans

July 20, 2026Angel Ackerman 1 Comment

It’s Monday morning, and while my red blood count maintains there is nothing wrong, my body shows the signs of anemia, which feel better when I follow a strict regimen of healthy eating, vitamin D and iron supplements… but that is something my primary care physician and I will discuss at my annual physical in September. And he will probably express disappointment that I have regained the ten pounds I lost last year.

It’s true for all of us– when we’re sick or weak or broken, we take care of ourselves (or we try to, I hope) and when we feel better, the routines that help us maintain that wellness fall to the wayside and lean toward repeating the same problems. I know I have a 20-year history of struggling with low ferritin reserves, why don’t I do better to always keep a routine of quasi-regular supplements?

Many disabilities are permanent but not progressive. And most people experience disability at some point in their lifetime– either congenital, temporary or permanent. Any person with a disability or aging person can explain the weight of co-morbidity, that while their various issues alone may not be progressive, when combined with our temporary or new ailments can make life exponentially harder.

My mother struggles to understand how I could be so easygoing and mobile as a kid while experiencing more falls and discomfort now. As my mother, she is no stranger to the aches and pains and limitations of aging, but she didn’t connect that the running and playing and constant activity I had as a child kept my muscles looser and healthy in a way that I can’t match as a fairly sedentary adult. That’s part of the reason why I’ve usually had a part-time job that requires movement and pursued strength training as a hobby.

I know that I need to lose 30 to 40 pounds. As a person aging with cerebral palsy, this would help my cardiovascular system and help take so much stress off my musculoskeletal system. But I have learned, through years of strength training and nutritional counseling that my body reacts strongly to salt and sugar, which means if I wish to lose weight I need to not only increase my activity level, but also cook whole foods, every time. The vicious circle of “I don’t exercise enough because my body hurts/I can’t breath/I’m tired” perpetuates itself because the only way to get past the discomfort is to do it… and survive and persist. (And then there’s the ironic reality that you can overdo it, and hurt yourself trying to do what’s right.)

This is not a disability struggle. It’s a human one.

All people experience a disappointment in and/or failure of their body. It’s a point Johanna Hevda and Julia Watts Belser both point out in their work. They claim that everyone experiences disability within their lifetime, but I extend that same idea to say that all people at some point experience some sort of body dysmorphia. Even if your body works, and is completely normal, people will experience dissatisfaction with it at some point. Maybe you hate your hair, struggle with your weight, identify as trans, wish you were a better athlete. All of these experiences have nothing to do with disability, but stem from the body.

A pile of three disabilty-themed books. The top one, How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva, is pink with red stars. The next on the pile is a beige memoir, FIfty Years of Walking with Friends, by DeAnna Quietwater Noriega. The one on the bottom is vivid yellow, Loving Our Own Bones, by Julia Watts Belser.

Disability Pride Month is celebrated in July because that’s the month when the Americans with Disabilities Act was passed. I didn’t put that together until today, so if you needed that tidbit of knowledge, there you go. I happened to order a whole bunch of disability-themed books in late June because my good friend Nancy Scott told me I should be doing more writing in that space, and she’s right, and she’s tired of hearing me say, “when I write my medical advocacy memoir.”

The four books from the disability space that I read this Disability Pride Month:

How to Tell When We Will Die: On Pain, Disability, and Doom by Johanna Hedva
A Disability History of The United States by Kim E. Nielsen
Fifty Years of Walking with Friends by DeAnna Quietwater Noriega
Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Watts Belser

I have been working to expand my collection of books by writers with disabilities. I currently have read books that range from poetry to books with characters on the autism spectrum, though none of these books include my fascination with medical fiction, a realm where Michael Crichton and Frieda McFadden spend some time, and one of my favorite memoirs (An Exact Replica of a Figment of My Imagination) which covers pregnancy and pregnancy loss simultaneously. My Goodreads shelf of “disability” books is visible here.

Poets with disabilities on my read list include Jennifer Bartlett, Larry Eigner, Susan Glass and Nancy Scott. Twentieth-century memoirists on my shelf who explore cerebral palsy include Christy Brown and Marie Killilea, and then there are the people I know, like Tylia Flores (we connected via the Internet) and Peter Altschul (who like DeAnna above is a member of the Behind Our Eyes writing group).

Here’s a very brief review for each of these four books:

A copy of A Disability History of the United States

On Hedva: I already wrote a long piece about this one, primarily to keep my own notes accessible for future use. You can read that here. Hedva is a queer writer who uses they/them pronouns and has issues with chronic pain and bipolar depression. Their essays are not a cohesive unit, but based on an essay that gained them a publishing contract when it went viral. Their greater thoughts about disability are steeped in personal experience, and often tied to their sexual experiences. But this author challenges us to view the difference between capacity and capability, just because we are capable of something does not mean we have the capacity to do it.
On Neilson: Nielson ended up researching disability as an accident (or serendipity?) as she worked on her history dissertation. Hedva writes philosophically about the capitalist resistance to disabled bodies (as we are worthless if we are not productive to society) and Nielson uses her history background to explore how the capitalist framework has disenfranchised all bodies that are not able-bodied white men, which I found hysterical because one of my publishing company’s initial projects was an anthology, Not an Able-Bodied White Man with Money. See that book here. She weaves together the plights of women, people of color, and people with disabilities into the same historical framework– all of them had bodies deemed inadequate and incapable and inferior by white men.
On Noreiga: This was my first time reading one of Noriega’s books. She’s a self-published author of indigenous heritage who lost her sight as a child. As someone on the waiting list for a service dog, I thought it would be fun to start with her experiences with her (I believe) eight seeing-eye guide dogs. The memoir covered the first decade-ish of Noreiga’s life in autobiography format. The final chapters each provided a summary of her later-in-life seeing-eye guide dogs. While the book did offer insight as to how these dogs perform their complex duties and build relationships with their handlers, the primary focus of the book is Noreiga’s college years and first few years of marriage.
On Watts: Nancy Scott ordered a Braille copy of this from the library at the same time that I ordered the print copy, and that was sheer coincidence. Some of Watts’ ideas are beautiful, like her interpretation of observing the weekly Sabbath as a tribute to not only spirituality but also to her body as an opportunity for rest. Like Heva and Nielson, she laments the push for capitalist societies for valuing bodies only on their capacity to do work– but I think all of these writers need to consider the role of industrialization in all of this. We are no longer in agrarian societies where families live and work together communally and therefore can cater the work to individual strengths and weaknesses. Watts treads a strange line. As a queer rabbi with cerebral palsy and a wheelchair user, she tends to tell us minimal information about herself, yet connect her spiritual journey to her physical one without giving us all the details. In many passages, her affluence shows through, that her financial resources and life situation have provided her with more opportunity that the average disabled person. And she seems to have a fascination with the potential amount of times blindness appears in the Old Testament. As said before, her ideas and themes overlap with Hedva and Nielson, and she focuses on building a relationship with God where you are whole and representative of God in your broken/disabled state. She applies this to beaity standards as well.

I will be revisiting some of these thoughts in my Substack this week,

Thoughts raised by Johanna Hedva

June 22, 2026June 22, 2026Angel Ackerman Leave a comment

Screenshot of the Goodreads review that is also quoted in the blog piece

I put Johanna Hedva’s How to Tell When We Will Die: On Pain, Disability and Doom on my wish list probably when it was a new release.

The cover design is lovely and the bio of the author is enough to draw interest:

Johanna Hedva (they/them) is a Korean American writer, artist and musician who was raised in Los Angeles by a family of witches and now lives in LA and Berlin…

I guess the first step of my thoughts on the book would be to share my Goodreads review with you.

I gave the book five stars even though the most Generation X parts of my soul wanted to give it four, because despite how much I disagree with some of her points– I can’t stop thinking about them.

My Goodreads Review

“I almost read this in one day– Johanna Hedva’s essays are poetic, academic, and provocative. Johanna has a variety of physical and mental health issues that them outside the realm of standard able-bodies. Yet, sexually and identity also play a huge role in their experience.

Johanna is about a decade younger than me, and in many ways I do not agree with their statements and conclusions, (I am a GenX white woman with cerebral palsy from a low socio-economic background and family of addicts, and if I try really hard and expend a lot of energy I can pass as able-bodied– some similarities to Johanna, enough to understand them) but their philosophy is never wrong.

When talking to my congenitally blind friend, who is a Boomer, about this collection, my friend said, “sounds like I wouldn’t like her.” And I said that she probably wouldn’t, but she still might like the book.

This book has a lot to chew on.”

So what are some of their thoughts and my thoughts on their thoughts?

Random comments first.

The title is a shout-out to astrology.
Their book deal for this collection stemmed from the essay Sick Woman Theory which went viral. The attention it garnered made them more of a figurehead and/or activist than they ever intended to be. The essay Sick Woman Theory is not nearly as interesting as her response to that essay, Why It’s Taking So Long.
As a member of GenX, I have some discomfort with how the queer community throws around labels. Johanna identifies as a queer, and not as a woman, which is fine, but I guess I remember the days when people didn’t need to define their identity as concisely as we do now. You didn’t need to label every aspect in which you are weird. It’s okay to just be different.

So let’s look closer at some of their points.

Essay One: “How to Tell When We Will Die”

Opening paragraph:

“Heroes die on the battlefield, never from chronic pain. Diarrhea never makes its way into myth. Tragedies are devoid of menstrual cramps.” Johanna has my full attention. On the second page of the essay, they talk about the representation of disability in early and twentieth century film, and how disabled people become “flattened by some insidious super-cripple myth.” Throughout this first essay, Johanna is tossing around some serious academic critical theory before suddenly turning into memoir…

They speak about not receiving a diagnosis for their ailments until in graduate school (despite later saying that the conditions were inherited from their mother and grandmother, so I think the statement should have been that they could not get a label on the diagnosis– she does state that doctors were “baffled” by her symptoms and “dismissive of their validity.”). And they mention that they stayed on for a second master’s degree to keep their student medical benefits to the tune of $250,000, that led to a career in the arts where they refused any job that did not meet their aesthetic. They chose poverty. They chose art.

I’m wondering why– even if they didn’t want a standard job with employee-sponsored health insurance– they didn’t just buy health insurance or take on medical debt instead of a quarter of a million dollars in student loans.

But then there are gems like “You do not have to be disabled to experience ableism” and “no matter how it arrives, disability will arrive for everyone, sooner or later” (which they repeat in the last essay.) And Johanna points out that the biggest ableist fantasy is that we control our bodies, and we will always be able to control our bodies.

Johanna talks a lot about her mother’s addictions, and the abuse they suffered at their mother’s hands, and of their own mental health issues. Her first suicide attempt happened at age nine, when she took a bottle of sleeping pills, and when she did not die, she carried on with her life.

We are more than 25 pages into the book when we learn that mental health plays a significant role in her disability, which we later (not in this essay) learn includes endometriosis and chronic shingles. I understand that people with disabilities do not owe any sort of explanation of their ailments to anyone, but if you are writing a book about disability, I believe that information should be front and center.

And in this essay she mentions her love of death and doom metal. You can hear some of her music here on YouTube.

Essay Two: “Sick Woman Theory“

The essay that started it all. I think it’s really important to understand that they called it “sick woman theory” because regardless of how they identify, the medical establishment and the world consider them a “sick woman” and they are seen as a “sick woman.” They frame their theory that our capitalist world is designed for the existence of “white, straight, healthy, neurotypical, upper- and middle-class, cis- and able-bodied man who makes his home in a wealthy country, has never not had health insurance, and whose importance to society is everywhere recognized and maybe explicit by their society, at the expense of everyone else.” To a certain extent, I want to call out a “Yes, bitch,” (as they toss around this phrase) but at the same token– would the experience be the same in the developping world/Global south.

Essay Three: “The Blast Radius of Disability”

I have to say that I love this concept, “The Blast Radius of Disability.” Disability doesn’t effect one person, one episode, or one place or time. Instead, it impacts everything around it, everyhing that it touches. Johanna speaks of time dvided into before and after sickmess, but I can’t help but wonder how they can divide time in such a way when mental illness entered their life so early they can’t really remember a before, can they?

It is in this essay that Johanna mentions that individuals with disabilities must operate according to “crip time” not clock time, doing things as the body deems itself capable not as the world says we have to do them. On one hand, I understand the point, but that’s not how the world works. I have to believe that there has to be a balance, of not overdoing things in order to conform to the mainstream standard and hurt oneself in the process. And there’s an inference that the entire world runs on the same precision, which isn’t true. There is “island time,” “Latin time,” and “African time.” Each culture has its own realtionship with time, so maybe they need to find a place and a rhythm that works for them.

Essay Four: “In Defense of De-Persons”

A discussion of capitalism and mental illness.

Essay Five: “Get Well Soon”

“Are these my limits, or are these the limits of the world?” Johanna reminds us that disability is part of a dichotomy– the ill being inactive while the healthy take action, the disabled remain still while the rest of the world creates revolutions.

Essay Six: “Notes on Activism (aka Notes on Failure)”

Organizing is exhausting, Johanna begins. Activism, they write, “reminds us how the world actually is, not now how we would like it to be.” Activism often comes off with hypocrisy– like buying your anti-racism books off Amazon.com. Their other question: How can you balance the need as an activism to care for others, yet also take care of yourself?

Essay Seven: “Letter to A Young Doctor”

I didn’t like this one. It seemed to repeat some of other concepts. Johanna tells this doctor all the other things they have already told us and will tell us differently in future essays. The doctor approached Johanna asking for advice.

Essay Eight: “Soft Blues”

Or “The Summer of the 12-inch cock.” The first several essays that are reflections on Johanna’s sexuality. And an in-depth exploration of her experience in a mental hospital for depression that led to her experiencing an entire summer of bipolar mania.

Essay Nine: “Can I Hit You?”

The BDSM essay. Which has the most amazing line: “Pain is the price I must pay to be awake to life.”

Essay Ten: “The Freak”

Another relationship essay. The only highlight I have in the whole essay is when Johanna discusses capability and capacity. They remind us that just because we are capable of something does not mean we have the capacity for it at this time.

Essay Eleven: “Notes on Trash Talk (aka Notes on Community)”

Interesting essay where Johanna gives a view of their obsession with fighting, boxing, wrestling and MMA, and how the way a coach talks to a losing athlete is the type of trash talk we could use more of as disabled people.

The next few essays are all Johanna’s entertainment criticism. I will skip those, even though they do circle around to disability as it all does.

Essay Fifteen: “Notes on Ambition (aka Notes on Survival)“

This is a complex one– looking at what we all need, versus what we want, and how many of our ambitions are actually motivating us toward ideals that might not be our own.

Essay Sixteen: “Hedva’s Disability Rider.”

They explore this rider more in a later essay, the one I mention that speaks back to the original “Sick Woman Theory” and presents the repercussions. But here, Hedva gives us the document they send to institutions that invite her to perform. I feel like some of the items on the rider should not be listed as conditions for employment, but instead factors of how much they should charge for their fee. If you know you need a business class airline seat on the aisle, you make sure you only say yes if the organizers give you enough money. Some of the informational items are valid: like allergies. But Johanna also uses the rider as a way to advocate for everyone with disabilities and call attention to how excluded people with disabilities are. They ask for sign language interpreters, live captioning, all-gender restrooms, wheelchair accessibility and audio description.

They say they know they won’t get all of it, but they like to have the conversation and point out how unaccessible and exclusionary the world is.

And this is why hardcore advocacy is exhausting, friends.

While we would like to invite all the people with disabilities to everything, why provide the services if the people aren’t there? I know Nan and I have attended shows at DeSales University where they have one performance with audio description and live captions. These shows are made accessible with grants. Start there.

Essay Seventeen: “Room Day”

Johanna’s partner is Johannes, a German citizen, which is why they now live in Berlin most of the year so they can get better medical care. She does not mention her partner until essay seventeen. The partner to whom the book is dedicated.

Essay Eighteen: “Soft Until It Gets Hard”

How can you not love this title? Another relationship essay.

Essay Nineteen: “Why It’s Taking So Long”

In this essay, Johanna discusses the rider and how when they send the rider to an individual, they would prefer not to see that individual in the context of the institution but as a person with whom they can have a conversation. Teaching moments? Which is exactly what they say later on the page when they discuss they are now part of a “learning experience” that they did not want to be. And here’s another great observation– if an invitation comes in for any event that involves the concept of care in any way and is being organized by solely white women, Johanna won’t do it.

The essay falters between the idea that Johanna never wanted to be an advocate but now that they have the power, they feel a requirement to advocate for everyone.

Here are some great points:

Capitalism is so demanding, it makes us all more disabled
Even when we are told we “have to,” humans can’t truly do anything alone
It’s a fallacy that all you need is will, and the proper manifestation of it
Care is often framed as debt
You might be winning, but maybe there’s no prize

Essay Twenty: “The Hag in Charge”

A lovely adventure through Greece that offers some recollection of Johanna’s poverty and her spiritual beliefs.

A line that reminded me of Nan, who says this often: some disabled people (Nan and I like to say it’s normally able-bodied people who become disabled) have a fantasy of healing, “and then hate themselves when it fails to arrive for them.”

Disability Lit Review, part one

June 20, 2026Angel Ackerman Leave a comment

Let me offer a bit of an author’s note on this one, or perhaps a caveat, that I only got five hours of sleep last night, and my body hurts today. This is the third night this week I got six hours or less of sleep, due to some fairly intense routine change that is kicking my ass. And the pain I am experiencing today is not my standard everyday pain, but similar pain in a more twitchy and unnerving form.

And this may lead to some of my more strident tones. Or perhaps I always feel my opinions with a certain sharpness, but ordinarily I present them after the application of a filter.

I will try to keep my aggressive aggravation to myself, but no promises.

Earlier this month, I drafted a “bird piece” for the Behind Our Eyes anthology, a collection in the works to highlight the members of the Behind Our Eyes email-based writers group for writers with disabilities. I joined the group a couple years ago after participating on the fringes through Nancy Scott, who, in cheap amusement and most things disability, is my partner in crime. I normally lurk in the group, but recently heard they were actively looking for bird stories. The anthology features a variety of sections and one themed block focuses on animals.

I wrote a creative non-ficiton piece about my Goffin’s cockatoo and I navigating disability together, with a present-day, present tense story of Nala plucking her feathers due to her anxiety and me trying to figure out why. The plucking led to her not being able to fly, which gave her a temporary mobility disability. So I used this present-day situation to frame flashbacks exploring why Nala was anxious, but also looking at my mobility disability and the similarities and conditions that made us good for one another. The anthology committee wanted just a bird story, so they’ll be publishing the present-day section of my interactions with Nala.

This was the first of two pieces I wished to submit to disability-associated anthologies. I have drafted the second, but that one is specifically for disabled voices to share what we wished the outside world understood. I revisited my first draft, and tightened it somewhat, and thought the piece sounded like an introductory chapter to my upcoming medical advocacy memoir. That piece has two themes– the beginning talks about how my family had too many problems for me to realize I was “disabled” which seques into the second half, about me finding out my body and assembling an adequate medical team.

Nan has been encouraging me to write more in the disability space, her paraphrased quote being that I could have a real impact there. And in my experience, there are two main types of voices in the world of disability literature. The most mainstream voice is the voice of the writer-first– commonly a writer who experienced illness or disability not from birth, with either some sort of privilege or talent. The second is the disability activist who is not a writer, but congenitally-disabled and fighting for their right and the resources to exist. (And I guess the third would be the hobby disabled memoirist.)

I find myself crossing all these categories. I have the natural writing talent, my background as a professional journalist, my credentials as an academic and historian, and the experience of a congenital disability. Yet, I have the privilege of being a white woman, and if I can borrow the term, I can “pass” as an able-bodied person if I focus really hard and am having a good day. I have the type of cerebral palsy that you might not notice or that might make you stare at my feet and knees.

This morning on social media, I saw a post from a disabled Iraqi/Afghan War veteran stating that he needed to retire his service dog as she had had a seizure. The man said that his career involved much travel and public speaking as an influencer and motivational speaker. I searched the internet for him and found a very basic web site, some YouTube videos and an Instagram, but no information about him or the experiences that lead him to be a motivational speaker.

Now, in everyday life, people with disabilities do not owe information or an explanation to anyone regarding details about their private lives or medical conditions. But if you build a career on your experience coming back from a disability, I think some of that information is owed to prove the validity of that expertise. (And if you are an influencer, a Google search should turn up some information about you.)

What I am about to say next is going to make me sound like an ass, and I mention to not to invalidate the experience of people with disabilities who fit the categories as I am about to describe– but the lived experience of a Cis white heterosexual male in the United States of America who develops a disability after voluntary service with the military is very different from the experience of a person who has never been able to walk, has a limb difference, total blindness or any of the multitude of disabilities that occur at birth.

(Add in family resources, and there’s another layer of complexity.)

Some people have more choices. Some people have more privilege.

ALL people living with ANY TYPE of chronic illness or disability deserve the same respect, but one must understand that they all come from different places. As all humans do.

This has led me into a brief literature review of the disability space, one I have only explored via finding books written by ordinary people on their experience with disability. My list included the third anthology from Behind Our Eyes and a service dog memoir by one of its members, Peter Altschul. I have a collection of books with connections to cerebral palsy: several modern memoirs by Tylia Flores, a pre mid-20th century memoir by Dubliner Christy Brown, and Karen, a parent’s cerebral palsy memoir that takes place about 10 years after Christy Brown, and then poetry and academic work by Jennifer Bartlett. And a highly academic poetry book by blind poet Susan Glass.

I recognized my need to diversify… especially as I start more work on my medical advocacy memoir and consider making more deliberate strides into this space.

Here’s what I ordered:

A Disability History of the United States by Kim E. Nielsen. I believe this was Nielsen’s Ph.D. thesis in history. In her introduction, she mentions that she is a white woman of certain privilege, and she ended up in this space by accident, with no connection to disability. Then, shortly after receiving a publishing contract for this book, her teen daughter contracted an illness that made her a wheelchair user and gave her a more personal glimpse of the issues she had talked about.

I finished this book yesterday, and it’s definitely an important work, exploring hundreds of years of attitudes and events about disabled bodies. Nielsen aligns disability rights with other civil rights, for women, for Blacks, for gays. She presents the idea that any body that is not strong, healthy, heterosexual, white and male faces the same discrimination and lack of belonging in the American social structure. And ALL of these bodies are disabled and deemed as unsatisfactory as part of the capitalistic labor machine.

It’s an important work that shows how ideas about disability evolved and how legal status/rights have changed.

Today I started:

How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva. This is Johanna’s fourth book, and the bio on the back lists them as a Korean American writer, artist and musician raised in Los Angeles raised by a family of witches.

Their introduction mirrors a lot of the same concepts about the issues disabled people create for American capitalism. Their experience though is one of disability after chronic illness. I have only reached page 28, and Johanna mentions a decade of chasing a diagnosis, but states that they inherited chronic illness from their mother and grandmother– which leads me to wonder why a diagnosis was such a mystery?

I suspect the reality is that Johanna had trouble finding a doctor to label the diagnosis officially, which is the “doctors are idiots” and the “American healthcare is broken” problem not that Johanna didn’t know what was wrong.

I hope Johanna eventually shares their disability with the reader, but as of yet it has not happened, and again– I know no one is entitled to know the private details of another person’s medical situation, but it is important when one is standing in a public space claiming authority regarding such issues.

The other two books on my new acquisitions are:

Fifty Years of Walking with Friends, another guide dog memoir by BOE member DeAnna Quietwater Noriega. I added this one to the list because of Noriega’s Native American heritage.
Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Bessler Watts. Julia is a queer rabbi. This book was recommended and you had me at queer rabbi.

Seasonal summary and hoping for new beginnings

June 14, 2026Angel Ackerman Leave a comment

My daughter is in the garage doing yoga right now– an old set of yoga DVDs I found on a discount pile somewhere 20 years ago. I used to used those DVDs once or twice a day, each routine a mere 20 minutes, and its impact huge on my body. I should be out there with her right now, but although it is 8:30 in the morning on a Sunday, I am already knee-deep in work. So maybe after my 9 a.m. meeting I will give it a go on my own.

I’ve had some successes in life lately, but health and fitness is not one of them. I’ve been struggling with my mobility since before my trip to Ireland in March. Some of that is due to lack of movement in my routine. Some is due to lack of chiropractic care and not enough stretching. Some is weight.

But now I’m experiencing more and more symptoms of anemia. What started as mistyping words– not misspelling but using completely different words: “basket” coming out of my fingers instead of “basic” and “winter” instead of “window”– has nos (and I just typed “not” instead of “now”) escalated to incidents of brain fog (driving past the bank instead of to the bank) and drinking too many caffeinated beverages without feeling their impact and literally not being able to keep my eyes open at 2 or 3 p.m. despite having healthy sleep hygiene and getting to bed on time. And all of these symptoms get worse with the heat and the sun. Which is also classic anemia.

I scheduled my annual blood work for tomorrow morning at 6:45 a.m. It’s not due until September so the insurance company will probably love that. I also left a message for my chiropractor, Nicole Jensen at Back in Line, because even though it puts a strain on my finances, I need the care.

My right leg is definitely leaning into its femoral anteversion, and the best way I can describe it is like I have a tree trunk instead of a leg that I’m dragging around. And then once it’s a little straighter and not locked into a weird position, any yoga I do will help keep things limber.

I started taking my vitamins last week: vitamin D/calcium with breakfast, iron with lunch, and vitamin C with dinner if I remember).

I’ve also cleaned up my diet and I think I can say that except for breakfast with Laurel at Panera on Tuesday, all food has been prepared at home. I have tried to make sure I get more fresh fruits and vegetables and include a protein with every meal. With this routine, I have lost five pounds this week. And I know that is all the sodium/water weight leaving my system. But if I with another 7 pounds off this summer, I could be at the weight I was last fall when I saw my primary care physician last fall.

Both Eva and I have struggled with motivation to eat so far this spring/summer season… We’ve both been busy, stressed and exhausted. Eva’s taking an online American Sign Language class through Purdue University and her midterm is tomorrow. It’s really cool to watch her learn. And to help her study.

We’ve both taken to finding items that are easier to eat. Often these are easy-to-grab meat products and snacks for her, and meal-prepped items like overnight oats for me. Last night we both needed something for dinner so I made tuna fish sandwiches which also helped us use some of the aging iceberg lettuce in the fridge. I’ve been adding kale to everything I can, especially pasta and eggs. My other coup was a make-your-own quesadilla bar– I had flour tortillas, corn tortillas and refried beans from the dollar store, all items I keep on hand (in addition to beans I cooked from dry and froze, in seven different varieties); we had lettuce, tomato, and onion left over from burger night; and on a whim, I had just purchased sour cream and a huge block of cheddar. We even had fresh limes to give everything a citrus kick.

Speaking of food, I’ve been tracking my food in the Omada app again. I still believe the Omada program is a waste. If you have issues with food and weight and health and don’t have a previous understanding of nutrition I can’t see it helping. It only helps me because it reminds me what I’ve eaten, how I’m trending and gives me some basic nutritional summaries. But the fact that my insurance company gets charged $30/month just because I stepped on a scale is nuts. My coach is really good, but for the most part she can’t tell me anything I don’t already know.

So much of health is making the hard and responsible choices.

And doing what you need to do.

It’s also the only app/system that gets worse over time. Their AI-driven logging system can’t identify basic foods, and when you try to edit the listings with information from the actual label, it just ignores you. Omada does not believe in tracking calories. It encourages instead you make better, educated decisions based on your hunger and how you feel. I understand that calorie-counting can lead to some psychological issues, but in the end, weight loss is math. They do track fiber, added sugar, protein and saturated fat. But not sodium. If you have a chronic weight or heart problem, you need to understand sodium.

And they encourage you to aim for 50% nutritous. I average 50% on any given day. Today I’m at 57% so far, but I’m due for lunch. That may change. Now, if you know me, you know– I try to make my meal choices as close to vegan and minimally processed as possible. I had gestational diabetes when I was pregnant with Eva, and trying to eat 2800 calories in six meals a day with no sugar on a vegetarian diet got me very bored. Thank God I decided to incorporate tuna into my routine. I can still remember some of those routines. My ten-thirty a.m. snack was large curd cottage cheese and usually strawberries or raspberries and my 8 p.m. snack was decaf coffee and unsweetened soy milk. (I had to do something to make the “milk” drinkable.) I still can’t look at a plate of food without seeing its protein and carbohydrate estimates in my head.

screenshot of the Omada app showing the list of protein, fiber, fat and sugar stats

Most people don’t have my experiences. And I know myself. For instance, if I eat a meal out, even if I make the good choices, I will gain 3 pounds the next day.

Most people don’t stay invested in their choices like I do– so if I only eat 50% nutritious, how does a standard American diet rank? I wouldn’t want to know.

So far today, I have had:

about 16 ounces iced coffee with a healthy pour of half and half. (That comes in at 50% because the coffee is considered a healthy drink, even if I drink it at every meal. The half and half on the other hand is not nutritious, because of its saturated fat content, but it has calcium, vitamin D and protein and isn’t sweetened or processed like other creamers.)
For breakfast, a little more than half an apple with skin on, with cinnamon sugar and mixed nuts. Water, 30 ounces, and one scoop of my Powdervitamin electrolyte powder which has no calories, is the most dense with minerals and salt, and sweetened with stevia. But because of the sugar on my apples and the powder, that again ranks my meal as only 50% nutritious. I could have used a processed caramel fruit dip or an icing and Omada would have ranked my choice as just as it did when I added just a touch of sugar. And the electrolyte powder gets treated like a sugary Gatorade even though I need that supplement to prevent orthostatic hypotension because I don’t eat many sodium-rich foods and I drink so much water. How many other people drink 50+ ounces of fluid before 9 a.m.????

My plan remains simple… More movement, more yoga, eating at home, and not eating due to stress. And in a few months or maybe a year I will write a blog post like this. Again. Which I do so frequently. As I struggle and fail and disappoint myself. But permanent change is a long game and it’s hard when the only person who holds the power and the motivation is yourself.

The Medical Refund I Didn’t Ask For

May 14, 2026Angel Ackerman 1 Comment

I keep promising myself that I won’t let this blog anguish and fade into nothing, and then I fail. If you miss me, check out Parisian Phoenix Publishing on the web or social media or sign up for my weekly-ish Substack newsletter. (Which you can do here.)

While I keep intending to do more jovial hometown adventures and life updates about the cats, the bird or the dog, it doesn’t happen. (We have TWO dogs this week as we have a jovial mutt with us as a boarding client. He’s a joy to be around, and he’s such a confident and stereotypical dog compared to our depression-prone backyard-bred pit mix.)

Eva’s dog has received a custom muzzle as a safeguard against her fear-based reactivity. And the difference it makes in our ability to trust her with new dogs and people and her comfort while wearing it is amazing. If you have a dog with issues, a custom muzzle is a game-changer.

But today I want to talk about what happened when I returned from Ireland regarding my emergency room visit two months prior. And I might sound like a conspiracy theorist, but it is what it is.

I have a high-deductible, employer-sponspored health plan through my husband, but as we are separated, I do not ask him to use his HSA. The HSA absorbs a lot of those out-of-pocket expenses. And my husband’s employer gives him money for the HSA as an incentive to take the high-deductible plan.

I have done the math. As a family, we have had the high-deductible PPO plan for 20 years. It sounds scary at first, but the monthly premiums are way cheaper than the other plans and the PPO allows us to see any doctor we want when we want, and when you have chronic issues, that’s important. I briefly had an HMO in the late 1990s when I had never had any health insurance before and no real medical treatment post age five, and my primary care doctor sent me to a podiatrist who specialized in ankles for my gait issues because he was pretty much the only provider in network. He told me there was nothing anyone could do without finding a provider in a major city.

And by the way, he was wrong.

If you don’t know, a high-deductible plan means that the insurance company pays nothing of any of your expenses until the deductible is met. In my case, that’s $3,500. BUT, my out-of-pocket maximum is $5,000 a year.

The ER Bills

As you may recall, (if not here it is: the original post and the ortho follow-up) in early January I had a fall and I debated between going to the ER or the urgent care because of my history with afib after bodily trauma… I was not in afib, but I did break my thumb, which has not fully recovered.

That fall led to about $800 in out-of-pocket orthopedic specialist bills and about $3,000 for the emergency room. Now, I use AblePay which allowed me to schedule payments for these services and gain a cash discount. For the ER bill, I opted to pay more than $2,000 in one lump sum of my American Express because it allowed me the largest discount. I then used the AmEx PlanIt feature to schedule that into monthly payments for a fee instead of accruing interest. In the end, I didn’t save money but it allowed me to space the payments.

But then… randomly, a full month after I paid 100% of the ER bill in a lump sum of on my credit card, my insurance company (Capital Blue Cross) decided to renegotiate the bill– which remember, they did not pay. I did.

I did not know this was happening. I was less than $200 away from my out-of-pocket maximum for the year so I scheduled regular chiropractor appointments and a mental health check-in with my therapist. The chiropractor appointments help me not twist my body into weird contortions that further cause complications from my irregular gait, and since my chiropractor Nicole was originally a physical therapist, she helps me stretch and monitors my gait to make sure my feet “do feet things.”

So, while I have debt from the ER visit, I can now have chiropractor appointments every other week for a small coinsurance amount ($40). And that is a huge help to my mobility.

On a Friday afternoon, I get an email from AblePay and a notification from AmEx that I had a $1700 refund on my recent medical bill. Which sounds great, right?

I logged onto Capital Blue to see what was going on, and indeed they had renegotiated my bill, which rolled back my previously met deductible and out-of-pocket maximum. And I had two chiropractor appointments and two therapist appointments that I was now responsible for. That’s about $700.

And I know what you are thinking, that still leaves me $1,000 ahead. But oh no it does not. Because remember, I had only paid one payment of my planned credit card charge. So the whole refund went to the charge, and I still needed to pay the remaining several hundred.

I negotiated a payment plan with my therapist and canceled all my upcoming chiropractor appointments.

I wish I could tell you that was where the story ends.

Present Day Repercussions

When I was in Ireland, I walked a lot more than usual. A lot more. As it was a relatively last-minute trip, I didn’t have a chance to try and get myself in shape. So I attributed the discomfort to my out-of-shape-ed-ness and called it a day.

But I am experiencing problems again. For the last week, I have been experiencing increased muscle pain in both my legs. My left leg usually does not hurt. My right leg always hurts. Like every day, I experience at least a pain level one but typically two or three. It’s like there is a braid of muscle that splits the back of my thigh muscle and presents with a constant pulsing, ache. But increasingly, my calves are experiencing extreme, painful muscle stiffness, in both legs, and my knees hurt.

My flexibility is better than usual, and I have no problems with my back, but if I touch the floor, it kills me to straighten my legs.

And this morning, after a week or so of this, and several days of feeling like my legs aren’t attached to my body when I walk, I started to cry. I caught myself, but I still started to cry. I took an extra dose of my baclofen– at double strength, and that made the calf pain go away. But I’m struggling to use my legs. And I’m getting damn tired of it.

I have tried to find and label what muscle hurts, but I can’t.

I suspect I need physical therapy. I have tried to take short but regular walks, making sure that I hit at least 5,000 steps daily, but I think it’s too little too late, and my muscles have forgotten how motion works. This winter was hard, long and cold; and with my part-time fast food job laying me off, I don’t stand and walk as much as I have during the last year.

But that leg pain I refer to as a braid? That started shortly after Stitch Fix closed. I think because I went from a job where I stood eight hours a day to a sedentary job. That’s almost three years of the same pain. That has now intensified.

So, why don’t I call the neurologist?

Because she costs $220.

And if she wants tests, I can’t afford those.

And If she agrees that I need physical therapy to stretch out and retrain muscles, that’s thousands of dollars. It sounds ridiculous. That a six-week physical therapy session would rack of thousands of dollars, but when I broke my ankle, which was TEN years ago, that cost me $5,500. That deductible and co-insurance adds up.

This is when I miss my Medicaid.

Becuase I work hard, everyday, and I just can’t afford the treatment and maintenance that would improve my quality of life.

And it sucks.

To make a choice everyday to deny yourself care you need.

Because of money.

And I believe– and maybe I’m wrong– that Capital One renegotiated my ER bill because I hit that out-of-pocket maximum and they didn’t want to pay my upcoming bills.

Our health care system, specifically for-profit, employer-sponsored health insurance, sucks.

It’s broken.

A prison and a pub

March 30, 2026March 30, 2026Angel Ackerman Leave a comment

Ireland has only had its independence from the British for about a hundred years. And the North of Ireland is still part of the United Kingdom, a fact that leaves the Irish with a special understanding for a land undergoing occupation, a people being oppressed, or a refugee needing a home.

My academic interest is post-colonial Francophone Africa, especially in how the French treated the North African Muslims differently than the other African colonial populations. I never finished my master’s in world history, but now I wonder if I did finish if it might be pertinent to look at the British and the Irish, the Protestants versus the Catholics, as the most powerful cultural conflicts often have roots in religion. Many Irish are pro-Palestine and pro-Ukrainian people. It’s not hard to see why.

For breakfast, we hopped on a double decker public bus, green and yellow TFI (transportation for Ireland), We rode the 13 and the 27. We headed over to Ernesto’s Café, and we arrived just in time as it got very busy by the time we left.

The café decor has a certain revolutionary Spanish theme while creating artisanal breakfasts. I had the berry scone with chantilly cream, berry compote and of course Irish butter.

From one of the posters on the wall:

I’d rather trust a dealer on a badly lit street corner than a criminal in a three piece suit

Upon return to our hotel, M managed to grab tickets for Kilmainham Goal, the old county jail turned famous Dublin prison that housed the leaders of the Easter Uprising. The narrow halls are from its early county jail days where prisoners were housed one per cell. The larger Victorian-era addition looks much more like our modern prisons today. The jail housed men, women and children. And the amount of people passing through its doors went up 10-fold during the Potato Famine, as (1) begging became a crime and (2) people committed crimes to go to jail to have food and shelter.

It’s hard to see against the stone, but in the one photo there’s a small cross. That’s where most of the leaders of the Easter Uprising were shot by British firing squad. One man was shot on the opposite side because he never recovered from wounds sustained in the uprising and he was shot while propped up in a chair.

In the evening, we went to Darkey Kelly’s to listen to Irish music and I had Guinness Stew.

I’m mentioning it here because most of the traditional Irish music talks about fighting the British– which they’ve done for 800 years.

Nothing we did today featured an interactive tourist experience.

Thank God.

Books in Dublin

March 29, 2026Angel Ackerman 2 Comments

Upon arrival in Dublin, we took a whirlwind tour of St. Stephen’s Square and Trinity College. Old cathedrals are an amazing place to really see the majesty of architecture, because so many resources and the greatest marvels went into building them. Christ Church apparently houses the Magna Carta. A city, especially one with Viking roots, acquires a lot of significance in 900 years.

Our second day here, we visited St. Patrick’s Cathedral. The woman who sold us our tickets was on a banner outside. The church is visble from M’s room. And I did hear my fair share of church bells this morning.

After St. Patrick’s, we visited neighboring Marsh’s Library, a preserved 18th-century library where Bram Stoker did his research. The books in Marsh’s library are older than the United States of America.

Granted, that’s not nearly as old as the book we saw later that day. In the afternoon, we saw the Book of Kells. It’s beneath a screwed-down glass plate inside a glass cube. It’s open to a page from the Book of Matthew in the New Testament. The hall outside the dark room where they house the manuscript has some explanatory material. They also had reproductions of some of the pages. They also went through how to make vellum and what materials they used to create pigments and inks. The manuscript is 1200 years old. In Ireland, that’s not that old, but that’s old for a book!

The next stop after the Book of Kells is the Book of Kells Experience– and that takes you into a room where you can interact with busts of famous authors (that freakishky bat their eyes and talk) or use the QR codes to read academic background on various significant figures. Because I mentioned Bram Stoker above, I’ve included him here as well.

We stepped into Trinity College’s Long Room, which won’t have books in it for much longer. They are doing some restoration work. The room features the art installation Gaia, Ireland’s oldest surviving harp, and the Proclamation of the Irish Republic. And it’s a majestic space.

Trinity College was founded in 1592 by Queen Elizabeth I, and M’s family member who attends here told us that the main green field on campus was designed specifically not to be big enough to play traditionally Irish sports.

In every neighborhood in each city we have visited, we have seen multiple bookstores. Near Trinity, we stopped in at Hodges Figgis. They had an entire room of Irish history and Irish fiction. It took all my self control not to buy exorbitant amounts of history books.

Since 1768, Hodges Figgis has been at the forefront of celebrating Ireland’s rich literary heritage. From timeless classics to contemporary masterpieces, our shelves are adorned with a diverse array of Irish books spanning every genre. Whether you’re a seasoned bibliophile or a curious newcomer, our expert booksellers are here to guide you on a journey through Ireland’s vibrant literary landscape.

This was where I also confirmed that my debit card would only work in certain places with certain processors. Elavon, the same processor I use for Parisian Phoenix, services some of the shops here. Those shops can take my card. I had completely forgotten that Capital One switched to the Discover network and now the card I have used all over the world is fairly useless. Sad really. I had that bank account specifically for travel and it has been used in multiple locations in Europe and in Africa.

Cliffs of Moher and Galway with Wild Rover

March 28, 2026Angel Ackerman 1 Comment

Today started early.

I was up at 5 a.m. to do some writing before leaving for Cliffs of Moher and Galway on Wild Rover Tours. It’s clear across the country, as Dublin is on the east coast and rather central and this day trip would take us straight across the the west coast and the Atlantic Ocean.

We met the bus at 6:55.

We left the hotel at 6:30.

I experienced some unusual motion sickness. So M took that as an occasion to drug me on the way home.

We stopped at a service plaza where I purchased overnight oats that turned out to be the best oatmeal I ever had.

The Cliffs were gorgeous but they had a lot of wind. The wind tossed people around.

Ireland has stone walls that serve as property lines and date back 5,000 years. I knew that, in a way, but I did not suspect how many there are. They are everywhere. The Burren, as Stephen the tour guide said, had some of the most welcoming, beautiful scenery anywhere in the world. As M said, “I don’t usually get off on a field of grass but…”

I don’t have many photos because I needed to save my phone’s battery life as we were away all day. The bus had USB charging ports but I have a USB-C cord. Perhaps if M reads this he will send some of his photos.

But I do have a video of some unusual, but also ordinary, traffic. Keep in mind, they drive on the left in Ireland so that narrow passageway in the video is indeed the other lane. “This is what we call gridlock traffic” Click here.

The craziest part of the day was when we reached Claddagh Jewellers on Shop Street in Galway, I felt something family about the branding of the shop. I studied the window displays and I found the wedding rings Darrell Parry and I ordered from the Irish store, Donegal Square, in downtown Bethlehem. We spent hundreds of dollars on them and waited for months for them to arrive from Ireland.

And we got compliments on them all the time. In the last photo in the series, the gold ring directly in the center of the bottom row is the men’s version.

A visit to Guinness Storeroom in Dublin

March 28, 2026Angel Ackerman Leave a comment

What we heard: The Guinness Storeroom has the most amazing view of Dublin.

What they don’t tell you: The Guinness Storeroom is a seven-story funnel designed to cram as many people as possible into a glitzy special effects zone that glosses over the basics of beer production.

The self-guided tour functions in a spiral that forces the visitor upward until they finally reach a rooftop bar surrounded 360 degrees by floor-ceiling glass. That’s where the ticket holder gets their pint, while surveying some of the most beautiful views of Dublin. But at the time, you get to share the space with hordes of other people, not enough seating and some of the loudest music you’ve ever heard.

So, it’s like a crowded bar on the weekend in vivid daylight.

And for fans of industrial history like me, it’s a disappointment.

And who decided to pass out lots of alcohol and tell people to climb stairs and escalators…

I probably would have paid extra to skip the fields of barley and cascading water to focus on a quiet room with historical artifacts.

The cask-making room was the best done– with displays of all the tools and photos of the men working. There were videos of how it was done and signs about how back-breaking the work was. But it was tiny, with ginormous piles of casks that competed with the actual history.

And the trains were on the same floor as the cafe. It made the trains feel like an afterthought instead of the exhibit.

But next to the trains there was an interesting piece of artwork. A sculpture listing the surnames of the workers. That was a fascinating recognition that industry is built on the backs of people.

Takeaway and the World Cup Qualifier

March 27, 2026Angel Ackerman Leave a comment

I wish I could tell you I went to bed early last night, but at 7 p.m. I got my second or third wind. M suggested Indian takeaway, because we felt it would be a great experience to get takeaway, because Americans do take-out and our takeaways are lessons not dinner.

And Spice & Rice had fal— an extremely spicy item.

He did not order fal. He ordered spicy chicken vindaloo and I ordered lamb korma, which shocked him because I don’t normally do mild dishes. I got the meal for one deal for 20.95 euros, which included a drink, a starter, a pilau rice, a naan (I got mango peshwaari)and poppadom. So much food. I don’t know how they consider that meal for one. That is easily meal for two.

We wandered down to the restaurant around 7:30 p.m. and it was dead, enough so that M was nervous that maybe the food would be bad. While the food cooked, we meandered to the end of the block to Peader Brown‘s, a traditional Irish pub that has a history of Irish Republicanism. They had several televisions visible from the tented outdoor area as they were at capacity because of the World Cup Qualifying match between the Czech Republic and Ireland.

The moon was bright and the game was amazing, each time we went to return for our takeaway, the Irish team scored. We wondered if maybe we were a good luck charm.

We read the pro-Palestine posters, and M even noticed a Palestinian flag across the street. That’s not surprising as the Irish are acutely aware of the politics of ownership by occupation.

We also started calling the Czech team and each other feckin eejits as I had stopped at a curiosities shop earlier in the day where they had some interesting mugs and dirty feckin eejit soap. (“Weird is wonderful,” the window said.”

This also led to M and I conversing about why Ireland has such a “cussing culture” and my hypothesis went to the idea that the Irish have a long history as a working class culture, people who have survived on an island for a very long time (in Dublin’s case 900 years).

Speaking of oddities, I saw a sign in the window of the barber:

“Spectacles and Wooden Legs always Wanted.”

We brought the takeaway back to our room where we stuffed ourselves with a delicious feast that we could not finish. So we piled it into the fridge, but we have no microwave so we may need to reheat it with some creativity with hot water from the electric kettle.

And then we turned on the game.

Now we were exhausted and stuffing our faces with Indian food, but the Irish team was giving it their everything. And we couldn’t stop watching.

The game remained 2-2 and went into double overtime, and an Irish player and a Czech player collided so hard the Irish player left on a backboard. (I have to Google that and see if he’s okay.) Those boys were tired, sweaty, covered with grass stains and still playing an intense game.

And then it went to penalty kicks. M tapped out. He can’t handle penalty kicks. But I had to know who won. The Czech team missed the third kick. The Irish team missed the fourth. Then the Irish team missed the fifth and the Czechs did not. The Czechs won the game on the fifth penalty kick.

From the news:

New York Times

Irish Mirror

I should have grabbed a Guinness. (I’m glad I didn’t because I needed a good night’s sleep! We even have pint glasses in the room.)